Erin2014
09-22-2015, 01:44 PM
Hi everyone,
My name is Erin, and I was diagnosed in October 2014 at age 55 (do you celebrate your diagnosis anniversary - the new normal??)
From what I've read so far, my story is similar to many others; never sick, an avid cyclist, tennis player and active mother of 3 and working full-time, and then boom. Sick as a dog, after several round of antibiotics for different illnesses (ear infection, double pneumonia, sinus infection, cough...) no change. Returned to my general physician, who was a fairly new grad and didn't know me well, and explained that there was something seriously wrong with me. She listen and sent me directly to a lab for blood work, urinalysis and chest x-ray. The same day I was admitted to the hospital as my anemia was so severe that I needed a blood transfusion. 3 weeks later I had been tested for everything (in every orifice!!) and finally had a positive ANCA marker and later had a kidney biopsy to confirm the diagnosis of Wegener's. I had kidney, lung, respiratory tract and hearing involvement. I also had neuropathy in my feet and cramping in my fingers and lower legs. I was put on high doses of Prednisone and Cyclophosphamide along with Nasonex, Symbacort, Septra, Amlodepine, etc.
3 months after diagnosis, I stopped Cyclophosphamide and started Azathioprine and started reducing my dose of Prednisone.
11 months since my diagnosis, I am no longer on Prednisone and stopped all medication for my respiratory tract (Symbacort, Nasonex). I continue to take Azathioprine, and I now take CoverSyl for BP and to protect my kidneys. My neuropathy has improved significantly and my cramping of fingers and lower legs is resolved (taking extra calcium and magnesium). I have some permanent hearing loss in one ear but since treatment my hearing is now stable. My sinus issues have also taken a back seat. My major problems seem to be kidney function, anemia and I'm also prone to respiratory infections. I'm also having dental issues and joint pain. I have good days and bad like I'm sure you all do.
Luckily, Canada has great health care and I have good health benefits at work and a supportive boss. I'm doing a gradual return to work but can't seem to work more that three days per week due to fatigue and the situation with my kidney function.
I've gained a lot of weight (20 kg) due to the Prednisone and don't seem to have enough energy to get back on my bike. Walking is what I do but would like to do more!!!
It's sometimes very hard to accept the life change this disease has caused! My children (13, 14 and 19) and husband (who also has a kidney disease) are all getting use to the new normal. As I wrap my head around this disease I worry about what the future holds and whether I will be able to enjoy retirement, grandchildren, etc. :sad:
I'm really glad I found this forum and look forward to reading and learning more about Wegener's.
My name is Erin, and I was diagnosed in October 2014 at age 55 (do you celebrate your diagnosis anniversary - the new normal??)
From what I've read so far, my story is similar to many others; never sick, an avid cyclist, tennis player and active mother of 3 and working full-time, and then boom. Sick as a dog, after several round of antibiotics for different illnesses (ear infection, double pneumonia, sinus infection, cough...) no change. Returned to my general physician, who was a fairly new grad and didn't know me well, and explained that there was something seriously wrong with me. She listen and sent me directly to a lab for blood work, urinalysis and chest x-ray. The same day I was admitted to the hospital as my anemia was so severe that I needed a blood transfusion. 3 weeks later I had been tested for everything (in every orifice!!) and finally had a positive ANCA marker and later had a kidney biopsy to confirm the diagnosis of Wegener's. I had kidney, lung, respiratory tract and hearing involvement. I also had neuropathy in my feet and cramping in my fingers and lower legs. I was put on high doses of Prednisone and Cyclophosphamide along with Nasonex, Symbacort, Septra, Amlodepine, etc.
3 months after diagnosis, I stopped Cyclophosphamide and started Azathioprine and started reducing my dose of Prednisone.
11 months since my diagnosis, I am no longer on Prednisone and stopped all medication for my respiratory tract (Symbacort, Nasonex). I continue to take Azathioprine, and I now take CoverSyl for BP and to protect my kidneys. My neuropathy has improved significantly and my cramping of fingers and lower legs is resolved (taking extra calcium and magnesium). I have some permanent hearing loss in one ear but since treatment my hearing is now stable. My sinus issues have also taken a back seat. My major problems seem to be kidney function, anemia and I'm also prone to respiratory infections. I'm also having dental issues and joint pain. I have good days and bad like I'm sure you all do.
Luckily, Canada has great health care and I have good health benefits at work and a supportive boss. I'm doing a gradual return to work but can't seem to work more that three days per week due to fatigue and the situation with my kidney function.
I've gained a lot of weight (20 kg) due to the Prednisone and don't seem to have enough energy to get back on my bike. Walking is what I do but would like to do more!!!
It's sometimes very hard to accept the life change this disease has caused! My children (13, 14 and 19) and husband (who also has a kidney disease) are all getting use to the new normal. As I wrap my head around this disease I worry about what the future holds and whether I will be able to enjoy retirement, grandchildren, etc. :sad:
I'm really glad I found this forum and look forward to reading and learning more about Wegener's.